By Arpita Das, Senior Programme Officer, ARROW (@ms_arpita)

We at ARROW have been working on the intersections between a number of issues in relation with sexual and reproductive health and rights (SRHR), including on religious fundamentalisms, food security, food sovereignty and nutrition and climate change. Those of us working towards sexuality rights for people with disabilities have come to recognize that SRHR of people with disabilities as a community are hardly recognized and need specific attention. CREA’s invitation in 2015 to work on the advocacy component of the work they have been doing with the ASEAN Disability Forum (ADF)[1]  served as a very good opportunity for us to engage with disability rights and its’ intersections with SRHR.

CREA has been working with ADF with funding from the Disability Rights Advocacy Fund (DRAF), looking at issues of sexuality and rights for people with disabilities. Having had previous experience working on issues of people with disabilities with respect to sexuality and rights instantly made me interested in taking this up as an issue that needed further attention. It was also exciting to be interacting with a new group of people and engaging in a process of mutual learning. Therefore, when CREA invited ARROW for collaboration and inputs in 2015, we at ARROW were keen on getting involved with this work. Our work together has so far included:

• Facilitating sessions on advocacy in a 3-day Training Workshop on Sexuality & Rights in Hanoi, Vietnam in September 2015
• Facilitating at a research training workshop by ADF in Jakarta, Indonesia in January 2016
• Presenting and participating at the ADF conference in Kuala Lumpur, Malaysia in October 2015
• Co-facilitating a workshop on advancing gender equality of women and girls with disabilities in Hanoi, Vietnam in May 2016

Participation and engagement with participants from ADF has been a very satisfying experience as it gave us the opportunity and the space to interact with a new set of people who had not been involved with the Sustainable Development Goals (SDGs) process. This could be because of a host of factors – activists working on disability are often hard pressed for resources and opportunities due to the invisibilization and stigmatization that they suffer; many also have to bear with additional challenges of mobility, and dependence on caregivers and families for different reasons. Working on sexuality and rights is also not viewed as a priority area. Inadequate efforts at engaging with people with disabilities as a community in addition to the challenge of inaccessible and technical language and processes further keep them away from these processes.

ADF participants have therefore appreciated being part of this newer initiative and getting to know about global level advocacy. Further, although they may have been part of work on SRHR, engagement with ARROW has given rise to an expanded understanding on SRHR among the group. At the same time, it also increased ARROW’s reach to a newer audience and learning and engaging with intersectional work on disability that we had not been part of before.

This was an important first step to explore and engage in more work on intersections on disability and SRHR and particularly with specific groups such as CREA and ADF that have already been part of this work and the movement. The organic way in which this work has taken place and expanded since last year is also encouraging, showing the need for such collaborations for this work. It also indicates that ARROW has tried to respond to needs as highlighted by people with disabilities as a community.

Additionally, as with beginning any intersectional work, the initial phase has been a learning experience, with all of us figuring out ways of understanding and engaging with different facets of the work. As much as it is about taking the issue of SRHR forward with a newer group of people, it is also important to understand and fully attempt to engage with disability as an issue in its own right. It has been important to understand the connections and intersections between SRHR and disability. ARROW has also been contemplating to work on accessible formats of publications for people with disabilities and also to have a few dedicated publications on issues of disability and SRHR.

I have tried to contribute to this work and towards building an understanding on issues of SRHR, advocacy and the SDGs and in turn there are many lessons that I have learnt from my work over the years on disability and SRHR. These include:

People with disabilities are, and represent, much more than their disability

People with disabilities are not a homogenous or a monolithic group. There are multiple layers of vulnerabilities and marginalization within the community. People may have different kinds of disabilities. While some may have one kind of disability, there are others who may be living with several disabilities. The specific issues with regard to sexuality – access to information and services – would therefore differ across the kinds of disabilities as well as the contexts, the geographical location etc.

Women bear a double burden

Women with disabilities have to bear the double burden of marginalization – that of their gender and the disability. When we talk of disability, it is also the systemic nature of the problems rather than the disability itself that may add to the complexities. These are some of the challenges that one must keep in mind while doing work on disability issues.

There are different kinds of disabilities

When we talk of disability, it is important to make a distinction between physical and mental disabilities as they have very different and specific needs that need to be catered to. Mental health is also a wide area of work and is under-researched. There is also very little work that is happening on mental health issues and needs more research and understanding.

Terminology may be confusing but all you have to do is ask

We must learn to represent people with disabilities in a manner that they are most comfortable with. The United Nations Convention on the Rights of People with Disabilities (UNCRPD) uses the language of ‘people with disabilities’; however there is no clear consensus from the community about the preference of one term over the other. As a non-disabled person myself, I have learnt that it is respectful to use the language of ‘people with disabilities’.

It is important, however, to also acknowledge people’s right to refer to themselves in different ways. When working with a group or community, it is therefore important to learn the terms they prefer to use and use these preferred terms while working with them. People with disabilities must not be infantilized. They are as able to learn, engage and participate in decision-making processes as non-disabled people. It is important that we engage with people with disabilities directly on issues that matter to them and make processes and policies truly inclusive.

Inclusion must happen in practice

People with disabilities must be included in all kinds of engagement on SRHR issues. SRHR work and interventions must take into account their specific needs and requirements. When talking of SRHR, we need CSE related information and curricula for people with disabilities in schools (mainstream and special schools) and otherwise, services and interventions on SRH issues, availability and accessibility of services and counselling related to contraception, abortion, etc., counselling and intervention services to prevent and address violence and abuse of people with disabilities, counselling and services to address their specific needs related to SRHR, just to name a few. Thus there is a need to invest in work on the intersections of disability and SRHR in the Asia Pacific region.

Enable effective participation by paying attention to the details

While facilitating the workshops/sessions, it is also important to keep in mind the complexities in levels of communication. For people with hearing impairment for example, there needs to be an attempt to make spaces available and engage with sign language interpreters. When working regionally or globally, there is also a need to have international sign language interpreters in addition to local sign language interpreters. This is because often, local language nuances may be lost in translation to English considering English is not the first language for most people.

It helps for SRHR activists to engage with sign language interpreters on issues of sexuality and SRHR prior to the meeting/training as the language of sexuality and SRHR may not be easily translated. Provisions must be made in terms of resources to have an adequate number of personal assistants and sign language interpreters in order to engage people with disabilities more effectively. As much as this is about the logistical arrangements of the meeting, this really helps in engaging with people with disabilities in a more effective and meaningful manner.

During the workshops, we as facilitators realized the need to go at a pace at which participants were comfortable, and be flexible and responsive to the needs of people with disabilities. This was especially important for people who had hearing impairment, so as to have full and effective participation from all participants and to be inclusive of and allowing space for the participants to effectively participate.

For those of you interested in reading further on this topic, please look at:

• ‘Sexuality and Disability in the Indian Context’ by TARSHI: http://www.tarshi.net/index.asp?pid=35

• Thematic issue of the Graduate Journal of Social Sciences on ‘Disabilities and Sexualities’, co-edited by Arpita Das and Remi Joseph-Salisbury: http://gjss.org/sites/default/files/issues/full/GJSS%20Vol%2012-1.pdf

• Sexuality and Disability website http://sexualityanddisability.org/

[1]The ADF is a network composed by Disabled People Organizations (DPOs) of the ASEAN region. It is a regional level platform, where its main work is to promote and protect the rights of person with disabilities in all sectors on an equal basis to achieve equalization and justice in economics, social and culture.

Website: http://aseandisabilityforum.org